aNtrakyattimes: It's tough for Marina, aged 12, with HIV

LIFE is not easy, whether you are the one with HIV or AIDS or whether you happen to be a caregiver to somebody who has the disease.

It gets worse when it becomes complicated. Marina is 12 years old. She is a person with a disability.

She is a slow learner and has trouble with all her subjects in school. Because of her inability to sit still and concentrate (hyperactivity), she had to be moved from a regular school to one with teachers trained to deal with children having learning disabilities.

The environment there was much better than in her previous one.

In her new place of learning, Marina is taught more living skills and does not just sit in a classroom. She is learning basic social skills, ranging from learning how to cook to how to swim.

That, however, has not taken Marina's problem away. She is still a child who faces difficulties in understanding things. Marina's mother, Azizah, had severe problems of her own too, when her daughter was born.

She was an 'injected drug user' - a term used to describe a person who uses drugs through injection. At that time, it was obvious to the authorities that Azizah was not in a position to look after Marina. Azizah herself, by the way, was an adopted child.

So a relative in the family named Khatijah, 55, decided to take in the baby and give her all the love she needs. The adoption has not been formalised to this day.

It is something Khatijah wants to do.

And according to her, until she does, she will not be able to claim welfare assistance for the child from the government.

Marina is HIV-positive, although she does not know it.

She got it from her mother who died of AIDS when she was two years old. Her father also had AIDS and passed away when Marina was just about to turn six.

The HIV status of Marina has, fortunately, not dampened or deterred the love and spirit of Khatijah for Marina in any way.

In fact, all the more reason Khatijah looks out for the child as if she were her very own. Cuts and bruises on Marina are treated promptly by the doting Khatijah, who insists that the affected areas are washed and bandaged at once.

On the doctor's advice, Marina's HIV status is also kept a secret for fear of discrimination.

Marina's teachers and the rest of the children do not know about her condition.

In fact, whenever the child asks Khatijah what her medication is for, Khatijah has to resort to telling white lies that the pills are for her leg or hand or some other problem.

Because Marina was a premature baby, she does have recurring medical problems. She misses school at an average of at least seven days in a month.

That's because Khatijah ensures that she doesn't miss even one of her doctors' appointments - for orthopaedic, neurological, eye and even psychological issues.

Khatijah, a 'single mum' to Marina, admits that sometimes she does go overboard in her care and concern for the child.

Her "overprotective attitude" at times takes her literally everywhere her child goes. This, she realises, is not good for Marina.

Khatijah can't help becoming overbearing. She says she gets possessive and angry about who meets and talks with Marina.

But there are some good aspects too.

Khatijah says by caring for Marina, she has learnt a great deal about HIV and how to care for someone who has the condition.

This includes never missing one's medication, being aware and alert of side-effect symptoms from the drugs and what to do next.

Then, there are also those moments of frustration which occur when education is needed on how to respond - rather than react negatively - to people with HIV.

The fear of HIV and AIDS is particularly difficult to overcome and Khatijah relates something that happened between her brother and Marina.

Since her close relatives are aware of Marina's status, Khatijah's brother, in particular, used to have hang-ups about Marina touching and using the cups that others use to drink, and he wanted instead a 'special cup' for her to use.

He even went to the extent of throwing away a whole jug which Marina had used to pour water from.

The most positive programmes which Khatijah has found beneficial are the ones where people from all walks of life can meet and share their experiences about HIV and AIDS - including those for caregivers of those affected by the condition.

These range from having support groups and activities to financial assistance regarding school supplies, medical treatment and transportation.

On another note, in commemoration of World AIDS Day on Dec 1 next week, PT Foundation is organising a public carnival with the theme: 'Wishing for Zero HIV and AIDS'.

It will be held in Kuala Lumpur at the Nu Sentral Shopping Mall at Jalan Tun Sambanthan, and the Kuala Lumpur Sentral Station in Jalan Travers this Saturday, Nov 29, 2014.

The purpose of the event is for everyone to come together for a fun-filled day of activities, and at the same time learn about what safe and responsible sex is all about.

Programmes begins from 11am onwards.

For further details, please go to: http://ptfmalaysia.org/v2/social-campaigns/world-aids-day/

Also make a date with 'The RED Show', featuring the dynamic duo Rozz and Meilin on Nov 30 and Dec 7 in Kuala Lumpur - a fundraiser in aid of the PT Foundation's Community Health Care Centre.

Showtime: 9pm - 11.30pm.

For further details on how to get tickets and more, go to: http://ptfmalaysia.org/v2/social-campaigns/revel-in-music-with-rozz-and-meilin-for-a-worthy-cause/

PT Foundation is a KL-based non-profit, community-based organisation aiming to provide information, education and care services relating to HIV/AIDS and sexuality in Malaysia.